After a long wait and alot of work we are pleased to say Shane finally got on the NDIS. This funding means everything as he can now access things that we could not afford. Therapies are not cheap and are getting more expensive. Accessing the NDIS hasn’t been easy as there is such a demand and back log of people trying to access it. Shane will finally be able to get back to doing Private speech Therapy, Private Occupational Therapy, get a SGD (Speech Generated Device) and his pull ups / nappies are covered. Having all of this, will take a lot of stress and worry out of how we, as parents, are going to pay for these. The weekly shopping budget alone takes a hit of somewhere between $30 – $50 on nappies depending on the kind of week he is having. It works out at $200 a month most months and yes thats $2,400 a year. The cost is roughly $1.25 per nappy and its not like we can skip it. When you get to having a 7 year old in nappies/pull ups you know the individual cost. Shane is going to greatly benifit from this funding across the board. His future is very exciting and bright. He has come a long way and has way to go but the point is he is getting there. In the grand scheme of things this is all we can ask for. NDIS maybe pain staking, tiresome and yes down right frustrating but hang in there because when it works it actually works.
So how many of us actually think we are beautiful? Pretty? Handsome? Well let me tell you something, what you see in the mirror and what others see are 2 different things. Honestly something I am learning to wrap my head around, I hear all the time “your so confident and self assured”. I’m sorry, on the inside and behind closed doors I am just as shit scared as everyone else about what I show to people and don’t think I am anything special. Perception of ones self and others is a screwed up thing, but its how we deal with it that allows us to learn, grow, evolve and with any luck turn into half decent human beings. Self doubt and self hatred is alive and well in all of us, this is the issue they are living rent free in our hearts and minds, the important thing is how we learn to manage it. Like everyone else, they kick my arse and I to want to hide from the world. There are days I have to remind myself that I am okay, I am really not what I think I see in the mirror. When in self doubt mode it is inherent that you don’t get stuck in that revolving door. You need to have the tools in your arsenal that can pull you out and do things to help change the perception of what you think is reality. There are so many different things that you could do that your able to get creative in how you can fight back at the demons that have a strong hold. It could be going out with mates, dinner, drinks, dancing, getting lost in a good book or movie, buy something that makes you feel good or smell good, clothes jewellery or accessories, they don’t call it retail therapy for no reason. For me I’ve just done a couple of photo shoots where I am the model, I have never done that before so the experience alone is amazing to feel glamourous and different, to step out of my day to day world and I get to keep the photos. The biggest problem in todays society is that theirs to many opinions from others about what we should and shouldn’t do, what we can and can’t wear. When did being different become an issue? When did being “Normal” become so damn important? and why? What is the incessant need to be like everyone else, to be part of the heard. I understand wanting to fit in but really does that mean we have to trade who we are to be in the heard. Be real people, be you, live YOUR best life the only way you know how. We are all made equal in the fact that we are all so very different, there are no 2 people the same so why do you strive to be like others when you can be you. We need to build each other up not tare each other down, and if there’s one thing I tell people and learning to grasp the concept of myself is that “haters are gonna hate”. No matter what you do or say guaranteed somebody wont like it, so within the legal limits do what you want. Know where you’ve been and know where your going, be proud , be you.
I have found myself recently people watching, I guess trying to find answers to why people do what they do. Why they act a certain way? why they treat people a certain way? from strangers to family to friends and I am shocked with what I have found, seen and been treated like. I am disturbed by what I have seen humans do to other humans, even those who are supposed to care about each other. When did we stop giving a crap about the human race whether it be their mental, emotional or physical state. When it comes to possessions we are a throw away society and everything is expendable. Problem being it seems normal to do that to people to, our emotions aren’t expendable. Is it too much to ask for people stop and give a shit about someone else other than themselves. Or are we so caught up in our selfish crap to care about others. I am not expendable, I am a person and I deserve to be treated a certain way. I believe this for everyone, no one is expendable, every body counts. Its a sad day when people start ignoring each out of no where, even to the point of hating each other over pathetic crap. We are losing the ability interact like descent human beings, I hope just its not to late. Not everyone has the strength to carry on time and time again. Every time we are treated badly, taken for granted, ignored, unwanted we gain a chink in our amour until one day we are no longer able pick ourselves up, dust ourselves off and keep going. Do you know if anyone you love, care about or interact with is broken and shattered on the inside? Did you play a role in it? People never cease to amaze me anymore, I say this from my own recent experiences that things come out of no where and from the most unlikely people. I am talking about the good, the bad and the ugly, from parenting, to relationships to basic interactions. I may not be able to change the world by myself and it may not happen over night but I can change one interaction at a time and I can change how I treat people. It only takes one person to start a ripple effect and we can change the world together. Instead of crushing someone and stomping on them we need to build them up, there is nothing greater than being that person that lifts somebody instead of destroying them.
Where does one begin with dating sites and the mine field that is. It is the modern way of finding hook ups for fucks, dates or other. What ever you after you will find it on a dating site, it certainly caters for everyone. It doesn’t matter what you look like or who you are, you will find someone. When you fill out your questionnaire or profile make sure you are really clear on what you want. Although you will still get offers of things you never thought imaginable, but then again that could be just me, hehehe. Never fear though as you have options, if you don’t like the attention you are getting change the wants in your bio so you get different options or change sites. There is so many different dating sites out there its just a matter of finding the right one that suits you and what you are looking for. There are paid sites, free sites and different options on each. Some of the dating sites that are available at the moment are – POF (plenty of fish), Oasis, E-harmony, RSVP, Zoosk, Bumble, Tinder, Senior Dating and plenty more. You are sure to find what app best suits with what you are looking for.
Personally I have used POF and Oasis, I have found it interesting to say the least with the people I have met. Overall it has been a weird experience for me as I have met some amazing guys who weren’t for me, others have turned out to be awesome friends and I also got photography work through it. Don’t get me wrong it hasn’t all been positive but the good has out weighed the bad. One thing I can say is don’t give up there is love out there you just have to be creative in how you go about getting it. The benefit of dating sites is you get to talk to someone first and get the basics out of the way before meeting them which breaks the ice somewhat. On the down side I have been asked by many men for tit pics and been sent so many dick pics I now have enough to make a scrap book. No questions seem to be off limits on these websites so be prepared to be asked all sorts of weird and wonderful questions. The next step Is too take the plunge cos you never know what you might find.
Moving out, a huge step on the separation road, that is anxiety filled and enormously confronting. The closing of one door and opening of another, on one hand your leaving your old life behind and the other you are starting new. Its a big factor for a lot of separated couples because you have to both jump in head first into the abyss to sink or swim. You both have to learn how live on your own again and all that comes with it. So you start again and get on with it, learning to be alone is tough after a long term relationship of any sort. Not having that extra person there is jarring for many because you get accustom to having them there. Then when you have taken that step and on your own there’s all the thoughts and emotions that come with it, hang tight though its a wild roller coaster ride. In this instance you have to do what’s right for you and any children involved. A huge learning curve for everyone and its how you deal with it that matters. Its not going to be easy but if moving out is the next step then one has to do it. Becoming singles again is a big shift in how you do everything from what you do to how you go about it. This is on basic level of everyday things, you are either re-learning or learning for the first time, things like how much food to buy and how much to cook.
You may find that you are playing catch up all the time and when you finally do it changes again, and this is true with everything in life. just when you think you got this shit handled something happens and it changes. We get so caught up with the other person that you become an amalgamation of the two. Moving out means remembering all the things you have to and only you doing them. We forget what’s it like living on our own and doing everything for selves. There’s also the physical aspects of moving out, and the associated costs involved. You don’t realise how much stuff you have and what it means to you until it comes time to divide it with a ex partner to go separate ways. You have to remember to be gentle with yourself.
Dating has changed from the last time I dated, we no longer go to clubs, pubs, parties or lounges trawling to meet people for dates, fucks or both. Its not the done thing anymore to meet someone face to face and have a conversation. With this online world we are thrown into a modern version of speed dating, thus being dating sites and the mine field that it is. Dating is hard at the best of times let alone after such a long time with the one person, then add into the mix, running a house, 2 kids and work. When are you supposed to find the time to have a life and talk to another adult about anything that’s not PG rated. To have dinner company that doesn’t involve having batman eat your dinner while you watch sponge bob square pants on repeat while having the kids scream at each other because one looked at the other the wrong way.
We all love our kids and want what’s best for them but as adults we need to be happy to. Happy mums and dads make better parents, part of this happiness is having adult company, for friends, lovers or partners. It doesn’t matter which makes us happy as long as we are, at the end of the day we all deserve it. We make play dates for our kids but not our selves, essentially that’s what dating is, just an adult version of a play date. So why aren’t we scheduling in these for our selves, why are we making it more complicated than needs to be. Why are we letting society dictate what we do or how we do it. Yes I am MUM, but did you know I am person too and I was before I became a mum. Like all parents we are more than just parents, we are human, yes we have feelings, yes we want to love and live and do it all. Being a parent does not mean losing ourselves along the way, part of being human means sharing ourselves with others no matter what sharing means to us. Dating is still such a taboo subject for single parents, yes granted its better than what it used to be but jeepers just cos I have kids doesn’t mean I cant date. As long as our kids are taken care of, then who gives a flying crap if we date.
Then theirs the perils of being on a date now because the rules have all changed, the social etiquette is different. The world has changed and so has the way we date, from getting the date to being on the date and that’s not even the first date which is hard enough. With the shift in mentality because of the ever changing world every thing else is playing catch up and having to adapt. What was acceptable is no longer and things that weren’t now are. These changes are things like blind dates, basically being fixed up by our friends or family, its not done anymore. Who pays on the date, its is not socially normal for the man to pay for the date, it is now acceptable to go Dutch, where both parties pay. First dates are coffee or drinks no longer taken out to dinner. Ladies drive them selves to dates and meet there, we don’t give our address out and get picked up. These adjustments can be hard to get used to when you haven’t been in the game for a while, but alas evolving is what humans do best. The only thing left to do is to ones self out there and hang on for the ride.
Sometimes you have to know when to pull the rip cord on relationships of any sort, some have an inevitable end. Not all marriages or relationships are meant to last forever and separation can be a blessing in disguise for all parties involved. Denial for the most part is what keeps many of us together with our perspective partners. Why do we do that, are we so desperate to show we are happy even if we aren’t, for what? keeping up appearances. Could it really just be that we so badly want to be loved as humans that we stay where we are not happy or is it not wanting to except that something is over no matter how bad it actually is. What ever the reason we stay in these relationships we have to ask ourselves are they the right ones. I know its hard believe me, ending something after spending much of your life with that person. I have done that myself after 16 years, ended my marriage for the sake of my family, for all of us, my ex husband, myself and my kids. Okay for me I had a unique perspective having cancer and all that comes with it, when I called it. However grateful as it gave me the courage to do something that neither of us probably would have ever done otherwise thanks to denial. Not everything is a fairytale with a happy ending, in reality looking in from the outside you only see what you want to see and what they as a couple are allowing you to see. Nothing is perfect in or out of a relationship but sometimes the broken parts can’t be fixed or put back together no matter how hard you try. The thing we have to decide is ending it harder than staying in a relationship unhappy? Everyone deserves to be happy it just has a price and what price are you willing to pay?
In everything we do we need motivators, we need to know in the end when we reach our goals, small and big, we get something for it. Motivators are a powerful thing to keep us striving to be the best that we can be. The trick is to find motivators that actually motivate you to keep going, to keep pushing and smash the boundaries. Motivators can be anything, I know for me they are things like, dinner in a fancy restaurant, a night away or a new piercing, but they can be anything like a new tattoo, new clothes or new jewellery. We use motivators for our kids because we know they work. Same principle applies with ourselves as adults. There are many motivators to chose from and for some of us involving others as a part of the motivators might just give that extra bit of determination you are looking for. The question is what motivates you?
Oh my, afraid to start again you say, what ever for? Starting again isn’t a bad thing it means change and I think that’s the bit most people are afraid of, CHANGE. Oh what a scary word, I say it like that because starting again means something pretty powerful. It means you have lived because you have tried something, failure or success is irrelevant at that point. Its giving you the opportunity to move forward in life, if finished something awesome or if you didn’t so what, you can change it for next time, with some luck no matter the outcome I hope you learnt something. You have accomplished something because you have been able to start again, either starting over or starting something new. There is many things in life that we need to start over from love, work, education, parenting and so much more. For the love of all things don’t fear starting again, life is an adventure if it nocks you down, pick yourself up and bloody get on with it. Do it again and again, its doesn’t matter how many times you start again its about starting again in the first place. Just make sure you getting closer and closer to what you are after achieving every time you do start again. Stay strong and stay true, to you and what you are chasing in life, that way starting again gives you hope and a drive to get you there and know that you can do it.
For parents it is a love/hate relationship with school holidays. Although its nice to not have to get up to the alarm and having the kids home. It is not always rainbows and unicorns in our little slice of heaven. It can have more ups and downs than a roller coaster, from giggling happy kids to screaming melt downs and back again. The start of the holidays are always so full of hope and wonder about where your going to take them and all the things your going to do. By the end of the holidays its counting down the hours until they go back. Mid year holidays are always harder with the winter weather as more often than not they are stuck inside and need some form of entertainment. There is only so much you tube you as the parent can stand hear and only so much you want the kids watching. So as we are in our 2nd week of the winter holidays, from one parent to another, I say hold on for dear life, these days are not going to last forever. Hang in there, you are not alone, your not the only parent in this situation. Call up other parents and arrange those play dates. Do those picnics in the park, and if its raining do the picnic in the lounge. what ever you get up to just remember that once the holidays are over you might even miss them…………….
Everyone has a comfort zone, its where we feel safe and protected from things we don’t like or want to do. Its all to easy to get stuck in that comfort zone and hide behind the barriers that we put up ourselves to have what we think is a reason not to do something or a reason why we act a certain way. However lets face it quite often its an excuse and what we use to get out of something. We have all done it, we are all guilty of it, we’ve all said to ourselves we cant because it hurts, I don’t have enough time, money, its to cold, its to hot, I just ate, its to hard, I will tomorrow, whatever your reason is, was it true. Was it a real reason or was it just an excuse? I ask you this what is it that makes us hide in our comfort zone and not want to break out side of it. Isn’t time to be all you can be, don’t run, don’t hide, be loud, be proud stand up and tell them with no apologies that this is who I am and I can and will do this. Get out of that comfort zone, live your life and push those damn boundaries and if people or the boundaries push back then grit your teeth, dig your heals in, stand your bloody ground and fight. Fight the good fight for you and what you believe in. If you don’t then who is going to, for you, your future and humanity. Changing the world and making a difference starts with you. Stand up and get out of that comfort zone, this where things happen, nothing will change sitting and cruising along in the zone. It stops you from reaching for the stars, seeing the miracle and being spectacular.
For those who do and those who don’t know, my youngest Shane, 5 yrs old is Non Verbal Autistic with a moderate intellectual disability. Which in short means he can’t talk, we are lucky as he has 5 words under his belt, for him it is huge. Doesn’t mean he will or wont ever talk. So we use other forms of communication like Sign language and Pecs – Picture exchange communication system. However the next phase of communication for Shane is a Speech generated device. This was always on the cards but normally introduced to kids older than 5. As Shane was introduced to Pecs and Sign language early on it means he is ahead of where he should be to be able to use this type of device. Now to the device itself, we are currently in a 3 week trial phase from the company, set up through the speech therapist at his School, he attends Dandenong Valley SDS – Special Development School. A Private Speech therapist can also set these up for their clients. The key info is
- 3 week trial
- It is funded by the government
- Cost $7,000
- 9 month wait on funding
- It uses Lamp words for life (this is the set up we are trialing)
The basic run down of the device is pretty simple and fast to use, it has to be for the kids to be able to use them and function in normal society. Basically its pictures on a screen that you choose from, then press the little man picture and it brings up the word and says that word as well. In short yes this will talk for him and say the words that he can’t. This will become his voice, there are many forms of speech generated devices out there and think the best reference to this is what the great late Stephen Hawking used.
NO I am not stomping my feet and having a tantrum. One has the right to say NO, in fact we all have the right. Every man, woman and child has the right to say NO. It doesn’t matter your sex, your race or age you have the power to say NO. To stand up and say NO when we see something we don’t like. To say NO to being touched, abused, yelled at, bullied, sworn at or made to do something we don’t want to do. It is the most powerful word we have in our vocabulary. NO one has the right to try and take that power away from you. When was the last time you stood up and said NO? NO this is not on, NO you can’t do that, NO I am not going to do that. Could you imagine a world where NO had been said but hasn’t been heard? Oh wait…… for many people we are in that world. The kid who said NO to being bullied, the family who said NO to the violent or abusive partner and parent, the person who said NO to being raped, the person who said NO you can’t treat people that way, the person who said NO you can’t treat me that way. You used your power word but it wasn’t heard, and you are left questioning why? So many times the word NO is used and not heard, okay granted it is misunderstood and has been used in the wrong context or for the wrong reason at times. Many adults don’t understand how to use the word, let alone adolescents and children. How? as one person do you fix this universal problem. It’s called education, teach your kids, yourself and yes your peers as well. Teach them how to say NO, when to say NO, why to say NO, what to say NO to. We need to teach them that they can say NO, but most importantly how to listen to the word NO. We may not like the word NO, we may not want to hear the word NO but at the end of the day it’s too bad, we actually need the word NO. It gives us boundaries, mental, emotional and yes physical ones. Sometimes there are boundaries that just cannot be crossed. We need to get back to the old saying NO means NO. It doesn’t mean maybe, it doesn’t mean this time but not the next, it doesn’t mean to ask again to get a person to change their mind. We need to listen and except the word NO. The word NO is vitally important in this volatile world, NO is a power word for a reason.
ABA is short for Applied Behavioural Analysis Therapy. It’s an intensive intervention program used for kids who fall under the autism spectrum disorder category. The main aim of ABA is to obtain an understanding of the child’s behaviour and change that such behaviour. Being able to spot the negative and positive behaviours is critical in the success of the program and for the child to be able to learn and grow. This is because the program utilises the system of rewarding positive behaviour while changing the negative. It is not a therapy that is suitable for everyone, largely because of the type of therapy it is, how many hours in a week it runs for and the costs associated with it. A standard program commonly runs for 20 hours a week and is integrated into everything from home and school and after school activities. This is why there is such a large cost involved as it perform by an occupational therapist to be with the child and family for the full 20 hours. Like a lot of parents I have done the level one training so I can help the therapist and know that is expected of us and how to be able to keep up with what’s going on where my child is at.
For more information click on the link https://auaba.com.au/
Pecs is short for Picture Exchange Communication Systems. It literally means that, it is where a person uses a picture in exchange for the item that is in the picture. It is an alternative form of communication that is used for a variety of disabilities. Some of these include but not exclusive, to speech impediments, non verbal autistic, deaf, ABI – Acquired brain injury and many more. It is a an enormous break through in communication for those able to use it. As a mum of Shane who is Non – Verbal Autistic it has helped us immensely in so many ways. It has lowered frustration levels for all of us as Shane is able to ask for what he wants. We as a family are able to know and understand what it is he asking rather than him standing there pointing in a general direction with us having to go item by item until we get the right one that he asking for. It is a game changer in regards to Shane’s confidence and personal growth. It has given him a voice and an opportunity to be heard. So i could keep up with the therapy and understand where he was at and what work needed doing i did the PECS level 1 training, which i have found to be invaluable in being apart of Shane’s therapy and as an involved parent.
For more information click on the link https://pecsaustralia.com/
As many of you know I had cancer and I am in remission. Many of you also know I had long thick luscious hair which 3 weeks into chemo treatments started falling out. Me being me, wouldn’t stand for it took charge and shaved my head. I was going to lose my hair, my way, when I wanted to, not when the disease told me I was going to. Now I don’t mind the big bald head look and thankfully I am able to pull it off, with or with out a hat. I never thought much about how different I must look until I met someone new who perceived me to be something I am not. Me being me laughed and thought it was hilarious what they thought of me. Then once I explained my situation and showed them photos of me with hair they were shocked at how different I look, there perception of me piercings and all changed. I didn’t think I looked that different until I looked at the photos together and damn now I see the difference.
As of this year I have both my kids at school, which for me is huge given my circumstances. My oldest Anthony has never been one for school and always hated it. My youngest Shane well given he is non verbal makes it difficult. I was apprehensive to say the least about both of them. With Shane being the way he is it meant that he is going to a disabled school not mainstream. Armed with this knowledge we had no other choice but for Anthony to change schools closer to Shane’s, I think the change of schools we were more worried about. However as per usual it turned out to be the best decision that we have ever made as a family. I say this because he has gone from attending sometimes one day a week to attending everyday and worried that he is going to miss a day. Shane well typical Shane has taken it in his stride and loves it. Warranted he won’t wear his school uniform unless his teacher puts it on him but as long as he is going I don’t care. As we say regularly in our house “pick your battles”.
So on Thursday the 25th of January I had my last chemo treatment. It was terrifying and awesome all at the same time. Yes I was sick, I felt sick, I smelt sick. It was terrifying because of the unknown, the what next, although my cancer journey is not quite over it means it is drawing to a close rather rapidly. It means I can plan and start moving on with my life. When I first started treatment back in October it was that “ok I got this”. It will be over in January I kept telling myself but like most people you get half way through and it started to get tough. Knowing I was half way there made it hard because I just wanted it over, and now chemo is. So much of my life and my families lives have been consumed because of my cancer and my chemo. Now we get that time back. We can start living again, not having to worry about am I going to get sick, will I be too tired, how many people are going to be there and what germs will they have. Can I eat that food today, will it make me nauseous. All questions that every cancer patient has to think about every time they leave the house. Now i can start to live again!
Sometimes we meet and connect with people who are part of our lives for a day and others for a lifetime. We meet people because it is meant to be, for what ever reason making that connection feeling the impact of them even only for a short time is what you needed. Any kind of relationship is hard to navigate, so when you are given signs from the universe however big or small you need to take them. Ask yourselves, What was the last connection you made? What kind of impact to have on each other? How long was that connection? We’re you open to receiving the message that was sent to you? Making a connection is paramount to the survival of the human race, it is within these connections that we get the answers we are looking for. These connections and answers come from people you least expect to be apart of your life, but the impact on which one person can have on another in such a short time can be amazing. You never know the kind of impact or impression you are making on someone. It will come at a time when you least expect it. Question is are open to making these connections?
Non – Verbal Autism, not words any parent wants to hear about their child. Honestly not words many people understand. My youngest Shane is 5 and he is Non – Verbal Autistic. Having a child with this changes everything you know and think you know about parenting. Knowing something is different with your child is one thing but having a diagnosis is a whole different ball game. Yes for us it made it easier because then we knew what we were dealing with and could get on with excepting and working on our new future. For me Shane was still the same, he hadn’t changed, how we deal with him and teach him life changed because it had to for him to be able to understand. There are many common misconceptions surrounding what Shane has, for example, he can make noises and sounds, which always shocks people as they believe there would be no sound coming out of him. As I have repeatedly told people he is not mute or deaf and has amazing hearing so yes he has some abilities. He can speak 5 words, then comes the question of but you said he is non verbal. This doesn’t mean no words at all, it can mean a few or for some a vocabulary base of 50+ words. Just because he is Non – Verbal doesn’t mean he is quiet. He has days where he is a typical noisy kid into mischief that i swear you could hear him from the street. Then other days you don’t even realise that a kid lives in my house and you could hear pin drop. I find people are often confused by Non-Verbal and what that means, it is different for everyone. We are lucky we live in a time where we have so many things available to us and new communication systems that we can utilise to teach Shane so he can one day be a functioning adult and with some luck a functioning member of society. Overall at the end of the day its his happyiness is what counts.
Autism spectrum disorder, what does this mean? It is now the term for all autistic disorders. It’s the main umbrella that all the different types of autism reside under. My 2 boys Anthony and Shane have ASD. What they were formally was Anthony had Aspergers and Shane had Non Verbal Autism among other things. They both are just kids with ASD which is ironic as they are on entirely different ends of the spectrum. The differences between them is astounding. Yet they are both classified as having the same thing. People often ask me 2 things and one is how we cope, how do I do it?As I have answered before, this is not about coping, you just do it. This wasn’t a choice, I did not chose to have 1 child with autism let alone 2. It’s not a conscious decision that you wake up one day think I wonder what it would be like to be a mum of 2 on the spectrum. Secondly I get asked what a normal day is like? This I laugh at because there is no such thing, I have no idea what a normal day is, no 2 days are the same. Just when you have it figured out for each kid on what there new thing is, it goes and changes. For me normal is not knowing if everything is going to turn to shit in a hell of a hurry. If we are dressed, fed and out the door then that’s normal, might have taken an hour and half one day and 20 mins the next but hey we are out the door. Like I tell people I don’t do normal!
Chemo that dreaded word, you have your diagnosis and now its treatment time. Terrified is an understatement when you are faced with a treatment plan that you have heard about, possibly seen others go through but now you are faced with it. You hear stories about other people’s experiences with it and neither you or your doctor know how its going to effect you. How your body is going to react is very different from one person to the next. even on chemo this whole thing is still surreal for me as I am not text-book. Things my body should be doing on chemo it’s not and things my body shouldn’t be doing on chemo it is. No matter what the treatment plan is or the side effects keep it real. Don’t tell people you are fine when you’re not. Chemo is just as big a head game as it is a physical one. You are allowed to say stuff the world and hide for a day, you are allowed to give into your cravings and eat what you want. If there is ever a better time or greater need to listen to your body then it is now. If you need sleep, then sleep, if you have no energy to do anything then don’t. If you are hopped up on steroids and need to burn the energy then do so. No body can truly understand how good or bad you feel mentally, physically or emotionally. Remember to be gentle with yourself, don’t expect anything and take each day as it comes. I have good and bad days, from mentally and emotionally flat to physically jittery and not being able to sit still. The trick is to find a way to use it your advantage. Draw strength and inspirition from where ever you can get it. You are going to need to muster what ever inner strength you have to get through what will be the toughest thing you are going to go through.
We all have bad days!
Nothing can prepare you for a cancer diagnosis, whether it’s quick out of the blue or a long drawn out process, either way it’s a shock. For me it was a real long drawn out process, it was a year of not knowing, a year of tests. Every time we thought this is it, this is the one, this the test that will give us an answer, we would go to the haematologist oncologist for the results and nope it was inconclusive. You become complacent and think ok we are not going to get an answer and when you finally do that’s a shock within itself. From dozens upon dozens of blood tests, 3 Pet scans and 5 biopsies later and all we could narrow it down to was yes its Lymphoma but what type came down to a 50 / 50 shot between non-Hodgkin and T-Cell Rich. However that didn’t mean it wasn’t another type that could be masking as something else. The biggest issue we had was that I had no symptoms it was found by pure accident when I had a CT on my back that I kept hurting. Even after a year and progression of the disease I still had no symptoms to speak of. So came the day we had to start treatment which made it difficult not having a definitive answer so we went with treating the worst case scenario out of our 50 / 50 shot which happened to be the T-Cell rich. Even now to look at me you wouldn’t say I am a typical cancer patient, even though I am receiving active chemo treatment. I have lost my hair like most cancer patients but I am also doing most of the same things. Waiting a year for an answer is rough but so is doing chemo. Starting chemo is just as overwhelming as the diagnosis itself. I will say this to any body at the beginning, middle or end of there cancer journey, whether your going through it as the patient or watching someone go through it, be kind to yourselves it’s not easy. The more answers you are given about your disease the more questions you have. Cancer changes you physically, mentally and emotionally, at the end of the day you are left with one question, what next?
Happy new year to one and all, may 2018 be the best year yet with what ever you have planned. Remember to live, laugh, learn and play hard while making it a happy and safe one. It can be a truly great year that has endless possibilities so let’s get out there make it happen. Promise yourself to make it epic and seize the bloody day!
I know i will